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Wednesday, 5 October 2016

Is it OK to 'choose' a child?

There is no doubt this is going to be an emotive subject. If we could choose to rule out disabilities in our children, is that something we want to be able to do?

Not everyone chooses to have children. Some people are desperate and have difficulty, some like me get them first time round and some others have no plans for kids and get them anyway. But not many will have sat down and thought, I know, what I've always wanted in my life and what would make it complete would be if we could have an autistic child. Or a child who was blind, had Down's Syndrome or an extreme pain disorder? What if you could choose not to have a disabled child?
I've posted many times about our happy neurodiverse family, how my children are 'different, not less' and about our proud moments when my autistic boys have made a breakthrough or an amazing achievement. But I've also plenty of posts about the other side of having my boys, their meltdowns, their struggles, being unaccepted... the difficulties that they and we face everyday because of this integral part of who they are. Both my son's are autistic.

Do I wish either of them away.. of course not. Do I wish society made it easier for them to exist.. very much so. But what if I could have taken their struggles away...what if I could do it before they were born... or before they were conceived? What if my beautiful boys could have been entirely different beautiful boys, with no neurological or physical differences that made life harder for them? Would I have done that?

Let's think about it another way. I love all my three children very much, but have made no secret of the fact that my husband and I don't want to have another child at the moment. The reason for this is because autism is likely to be genetic. There is a high chance our next child could have autism - and I don't think we could cope with that presently. We don't want another disabled child. So what if I could guarantee that my next child would not have autism? Wouldn't that solve my issue, and my husband and I could made our five into six?

'Science can't do that,' I hear you say. Well no, not yet.

But we could be closer than you think.

All the conditions I named are genetic. Several genetic conditions can be determined using a non-invasive prenatal diagnosis (NIPD) or testing (NIPT). These work because a small amount of any baby's DNA is present in their mother's blood during pregnancy and can be detected in the mother's blood from about 7 weeks onwards. Both an NIPD and NIPT predict with 98% accuracy the presence of certain chromosome related conditions in the embryo (which technically becomes fetus after 11 weeks of pregnancy). As it is not 100% accurate, where an additional test can confirm the condition its called an NIPT instead of an NIPD as the 'diagnosis' is not confirmed until an additional more risky invasive test is carried out.

Currently in the UK, the NHS offers NIPD for several conditions including Cystic Fibrosis, achondroplasia and thanatophoric dysplasia, Apert Syndrome, Crouzon syndrome and other what are called 'single gene disorders'. They can also be used to determine high risks associated with the sex of the baby such as Duchenne muscular dystrophy, Haemophilia, Adrenoleukodystrophy and Congenital adrenal hyperplasia.

So far so good?

In some cases finding out about a diagnosis can have an impact on how baby can be treated in the womb or for birth plans. For example, special instruments may be used if there is a high risk of baby having haemophilia to reduce the risk of bleeding. A female baby with congenital adrenal hyperplasia can be treated in the womb to prevent the abnormal development of external genitalia. But for most of these conditions it's just knowledge. So what happens next?

One of the new prenatal tests about to become available on the NHS is an NIPT that can very accuracy detect Down’s syndrome along with Edwards syndrome, Patau syndrome and Turner syndrome. These conditions occur due to different numbers of chromosomes. Tragically around 9/10 babies with Edwards or Patau Syndrome die within their first year. That's maybe the saddest things I've ever written on this blog.

But what about Down's Syndrome? What happens next there? According to the NHS, although there is no "cure" for Down's Syndrome, "there are ways to help children with the condition develop into healthy and fulfilled individuals who are able to achieve the level of independence right for them. Improved education and support has led to more opportunities for people with Down's Syndrome. These include being able to leave home, form new relationships, gain employment and lead largely independent lives."

This NIPT is already available in several countries. However, the result is not an embracing of improved education and support leading to these opportunities in some countries, instead it has resulted in all Down’s Syndrome pregnancies there being terminated.

Now what do you think?

I've said before, I don't know what I would have done if the old fashioned Down's Syndrome test that I was given (as standard practice by the way), had come back as 'high risk'. I was relieved when it came back as low. And I suspect this was because of the pre-conceptions about what Down's Syndrome was. I knew very little about it. What I had was mostly a perception that had been created by society I think. But despite still knowing relatively little about it, I think my perception of it has changed. Not only have I met a few people with Down's Syndrome but I think it is also undoubtedly because I have children with their own conditions that need extra support.

I can see how some of the things listed on the NHS site to help someone with Down's Syndrome are familiar to me as someone parenting children with autism. They can learn and can function better in the world with improved education and support. I've said before that if there was a way we could have known about autism earlier we would have been more prepared to help and bring up our kids. However, my boys still each struggle with many things.

But the struggles our first son had did not deter us from having our second son despite having a higher risk of autism. And when David was diagnosed we were still over joyed when we fell pregnant with our daughter, who does not (currently) have a diagnosis, though I haven't ruled it out. I want the kids I have, I love them to pieces, but, I don't think we could cope if our next one had difficulties too.

And this is where is could get real for me. Did you know autism diagnosis is much greater in boys than girls? Over five times more likely infact. As the NIPD above could determine sex early in pregnancy, it could tell us whether we have are having boy, much sooner than a scan, which means our baby has a higher chance of getting an autism diagnosis. I should point out that presently, we could not get the test for this reason on the NHS.

A future version of this test could be even more accurate in determining autism likelihood. So if I could get today's test or a test in the future, should I fall pregnant and then decide whether to continue with it based on this probability of the child having autism?

That's not the question I'm really asking is it... the question is ... should I be able to?

And that's a question I cannot answer either. As a mother who could easily have another autistic child and for that reason has chosen to not get pregnant again, I cannot and would never think of passing judgement on anyone for any choice they made with their pregnancy. It is extremely personal and warrants the utmost respect.

And that respect, for parents, for people (disabled and not) and for society is why it's important what we think about how tests like these are being used, monitored and implemented. And that's not even me talking. Much of the information on this post came from The NHS RAPID Project (Reliable Accurate Prenatal non-Invasive Diagnosis), a five-year UK national programme funded by the National Institute for Health Research. A project that lessens the chance of 25,000 women a year miscarrying due to an invasive test. But even this NHS site says:

"The nature and timing of pre-test counselling may also have to change. The ethical and social implications of the potentially easier access to non-invasive testing may also be significant. As NHS laboratories are already experimenting with NIPD, there is an urgent need for a formal evaluation to develop quality procedures and appropriate, safe healthcare delivery systems accounting for patient preference, and yet minimising risks to families from improperly implemented new technologies that might otherwise simply ‘seep’ into practice."

And it's this same respect that means we should carefully consider where this capability could lead us and where we want them to lead to. And that discussion should include those affected by that future, like parents and people with conditions and disabilities.

43 comments:

This was an issue I faced with my second and third pregnancies. My eldest was born with albinism, an auto-recessive condition. I could have had genetic testing in utero to see whether his sisters also had the disorder, but I chose not to as it would have had no bearing on whether I went through with the pregnancy or not. I would personally never terminate a pregnancy on those grounds. The same would be the same with autism (which my two eldest kids share). It's a very dangerous line that we are about to cross and I'm relieved I'm not the one who has to make those decisions but I feel for those who do. A very thought provoking topic - thanks for making us all think about a difficult and somewhat uncomfortable topic.

Great post, and very thought provoking. As parents, I think that we always want things to be easier for our children, for them to have the best lives that they can have. If there was a way to do that in utero, I think it would be a hard temptation to pass up, depending on the circumstances. Its a slippery slope, we shouldn't be messing around with genetics to try and make our children smarter or stronger, but with something like Downs, is that the same? I honestly can't say. I don't know where the line would be drawn. #bestandworst

Its a problem that happens often. Science moves faster than our ability to fully understand the consequences of what we are attempting and good intentions lead to unforeseen problems. Back from #blogginggoodtime

Hi Ann, I agree with Kirsty; it is a very thought provoking subject. Here in Greece used to benormal for potential partners to be tested for compatibility and to see if either potential parent carried a 'faulty' gene that could lead to having a disabled child. The results of these tests often resulted in the end relationships.

When my son was diagnosed with thallasemia, a type of anemia common in Greece (which must have come from my Mums side of the family), I was expecting my daughter. I was advised to get tested myself (as the anemia must have come from my side of the family). We were also advised to get my daughter, who I was carrying at the time tested too. I came back silent carrier, but I refused to have my daughter tested. Many people live with thalassemia with few or no symptoms and I didn't think it was right to know. But that was me. And it turned out that she didn't have it.

My son also has autism, but would I have done anything differently had I known? I don't believe I would have. But maybe if circumstances were different I may.

One story I will always remember. I met a woman who was pregnant at the same time as me. She was given a test for Downs Syndrome (for her baby) and it came back high probability. Her and her husband were in a turmoil not sure what they should do. They finished their holiday and returned to the UK. The next year they came over, the had a perfectly healthy little girl with no sign of Downs Syndrome. The couple were so happy that they hadn't gone down the road of ending the pregnancy. It's stories like that that make me stop and think.

Thanks for a very interesting and thought provoking post. It's such a fine line to tread and for decisions to be made. I read that in Iceland termination rates amongst those who have had the NIPD tests are 100%. That can be interpreted in so many different ways. We received a false positive test when I was pregnant with my first child and the attitudes of the medical staff were pretty awful and negative, and I think attitudes towards genetic testing need to change alongside the medical developments otherwise I think there will never be a balanced argument.Thnx for making me think this morningXX#MMBC

This is such a hard subject and one I can't even agree with myself on! I love gains in technology and science, but a tiny bit of me thinks, but what about Mother Nature. Next we won't need parents at all. #ablogginggoodtime

This is a complicated and emotional subject but I can't help but feel, shouldn't these tests be treated the same way as any other issue related to a woman, her body and her pregnancy? I am pro-choice, personally and feel that issues like this should be a private and respected decision of the mother and father and if people knew they could have this checked but that the NHS or government or whatever were denying them for any reason, it would only cause bigger issues. xx #coolmumclub

Thank you Claire for your commentson this delicate subject. I would not dare to judge any parent making such decisions, and am careful to say so in the post. Withheld technology maybe sounds dangerous too. Some may argue that at the moment despite being given a test, information is effectively denied through not being wholly presented or available. It certainly is a difficult area.

This is such a sticky subject isn't it? My oldest has Autism and my ex husband and I waited for five years to have another. Mostly, because we weren't sure if we would pass it on. We wanted to try for a girl though so we gave it a chance. When I found out I was having another boy, I got worried but by then I had so much more education about Autism that I knew I was prepared. When he was old enough I was able to put him in a program for babies and pre-schoolers that did testing and evaluations to see if he was at risk for it. He didn't have Autism. He did end up with ADHD which does run in my family but I guess what I'm trying to say is even if I had known he had Autism, I would have kept him. I wouldn't have done anything differently but I can also understand why parents would want to do this testing. It really is a fine line we walk in this world and none of us can really say for certain whether this is a good thing or not. There is a line but figuring out where that line is can be difficult and different for all of us. Love this post! Thanks so much for sharing it. #ablogginggoodtime

It's very difficult isn't it. Obviously I can't imagine a world without my sons. My view of 'disability' has in many ways to changed to one of 'diversity'. And I'm in favour of choice, when it's been properly presented. The fact that tests are almost 'standard' is perhaps a reflection on that.

It's a very tricky issue. My eldest has complex developmental issues which we were told had a genetic element. Husband and I had to have a long think about whether we could risk having another one. In the end we did, and thankfully our second child was not affected. It's so difficult and I think a lot more policies need to change before the option is given (counselling, etc) so that everything is in place to care for the people involved #CoolMumClub

What an excellent read. I can only imagine how horrendous any news that your child, baby or foetus has a condition is extremely distressing. The problem is that for many people the future they visualise is based on so many scary assumptions. We have a friend whose son is diagnosed with Autism, and it's pretty scary to imagine anyone terminating him based on that - he's a really beautiful, fun loving little boy.Thanks for linking up to #coolmumclub

Thanks for writing this. I watched the programme and thought it was very powerful and thought provoking. If testing is going to become more widespread surely the information provided to parents at that time needs to be balanced so that they can make an informed choice. If you are presented with worse case scenarios you may make a decision based on fear. #ablogginggoodtime

This issue is definitely controversial and a difficult decision for the parents to be. Reconciling science and morality is hard enough, but then there's also consideration for those siblings with the genetic variation the testing aims to circumvent (with the very best of intentions by the medical practioners). In the end we love our children regardless of their differences and all we ever want for our children is happiness. I think it is logical and practical to do whatever we can to minimise the difficult challenges they have to face. I agree it would be a difficult decision to terminate an existing pregnancy, but what if the parents cannot conceive naturally and any child is conceived through IVF? In that situation successfully fertilised embryos are tested beforehand and the parents then must decide whether or not to discard those embryos with the genetic variation.

Such a tricky subject. Ultimately, no, I don't think you should be able to chose how your child turns out. That said, before we had kids, my wife was tested to see if she were a carrier of Duchene Muscular Dystrophy because of her family history. I recall the doctor saying a positive test result would present us with "reproductive choices". It was clearly well meant and what other language could she use? Even so, it still sounded a little sisnister. #BrilliantBlogPosts

Great post and great question. Ultimately I think its dangerous whenever we start to begin to talk about effectively playing god. Like others have said, its a slippery slope, the lines are blurred and it becomes very difficult to begin to start to say to what extent it is ok to screen genetics in this way. I also fear that because we cant in a lot of cases give 100% accuracy of results there will instances where perfectly healthy babies will not get to see life that should have and that will surely only become more common place as a result of further and wider screening.. Emily #KCACOLS

I think the way we are moving forward with things like the NIPD is wonderful but the fear that it could then pose more terminations....I'm not sure that part of it is a good thing. I personally, would like to know,because I think I would be more prepared for a child that may have difficulties - perhaps more metally aware because I could them go on to read what I need to do as a mother, what I should be prepared for. Like you say, it can prepare for special birthing instruments. Either way, it is a personal choice and I don't think we have the right to judge or comment on someone else's personal choice. Thanks for sharing at #KCACOLS, hope to see you back next week!

This is a very interesting and thoughtful post. There are so many ethical and philosophical questions that these sorts of tests etc bring to the fore. I'm not sure what the answers are but you've got me thinking! #kcacols

Thanks for putting the time in to write such a post, its well written and brings about a whole load of points to think about. I'm sure there will be lots of opinions and people lingering over your post as I did while they consider the what ifs. Mainy#KCACOLS

Oh wow- great read. As a former special education teacher with expertise in Autism I am very interested and curious in the genetic prevalence of the condition in your family. Personally I think at this point genetic choice would maybe have to be a case by case basis.

I only caught the second half of the documentary and found it brilliant! It made me cry several times. I can not imagine a world without diversity. I cannot imagine a world without our out of the box thinkers, these are the people who have shaped the world. If we were to eradicate autism half of silicone valley would be gone (according to Temple Grandin) I am really scared of where our obsession with perfection will lead us next. This is such a personal choice and very difficult to legislate. Thank you for linking up to #EatSleepBlogRT Great post again! 🌟

This is such a tough topic, on one hand it would be great if there were a way to stop all disabilities - but at the same time like you say usually the only option is to end the pregnancy as there's no cure for the condition the baby has. I guess at the end of the day it's up to the parents as to their decision but it's one I definately would not like to make #bigpinklink

Really interesting post. This is definitely something I've thought about. My son is healthy and as far as I am aware neuro-typical (though he is only two so too early to tell I guess) but I worried about it a lot when I was pregnant. A really thoughtful piece of writing, and I think it's impossible to say what we would do in that situation unless we were in it ourselves. #bigpinklink

It's such a tricky one. Amazing that we can find out these things so early on, but so s difficult that people sometimes make the decision to choose not to have the baby. I also can't get my head around couples being able to choose the sex, it all feels as if it's a bit wrong! Thanks for linking up to #MarvMondays. Kaye xo

This is very interesting and definitely gets you thinking, I would have no clue what I would do if I was told there was something 'wrong' I suppose the only thing you can do is have all the information available to you and decide on what's right for you and your family x #MarvMondays

Such a complex read, I really don't know where to start.Firstly, it's great that you have raised this controversial question. So many of us will have so many different views, but not necessarily someone they can speak to openly about it. It really helps having bloggers keeping the conversation going.

I don't know where I stand on the subject because we have never been in the position. But I know that when the ultrasound scan showed that Little Button had a ginormous head (well really big), I didn't care, because she was my little girl. And that's all that mattered. *She did even out in the end in case you were wondering :-) Thank you for linking up to the #DreamTeam x

What is Autism?It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.

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